Voiceover:
Welcome to The Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments and advocacy efforts, as well as candid and informative interviews with our community, those living with MS, and their families and carers, together with leading clinicians, researchers and advocates.
Julia Morahan:
Hi, everybody. I am Dr. Julia Morahan, head of research at MS Australia, and one of the hosts of The Raw Nerve podcast. I’m coming to you live today from the Frontiers in MS, hosted by MS Australia, in conjunction with the Brain and Mind Centre, at The University of Sydney.
We’re here at the Susan Wakil Health Building, and we’re about to go into a panel session, to talk about all of the amazing research and findings that we’ve heard about today. I hope you enjoy.
George Pampacos:
Welcome to the panel discussion, Introduction to Emerging Research and Clinical Trials: Shaping the Future of MS Prevention and Care. Today, we’re bringing together experts from various fields, researchers, clinicians, and individuals living with MS, to explore how new research and clinical trials are influencing the direction of MS prevention, treatment, and the quality of life enhancements.
Our panellists will start by discussing recent advancements in early detection and prevention, that offer promising insights. We’ll also hear directly from those affected by MS, sharing their views on gaps in current care, and where research could have the most impact. Together, we’ll consider how to balance the immediate need to improve quality of life, with a long term goal of finding a cure. Our clinicians and researchers will shed light on the challenges in translating breakthroughs into everyday practice. And finally, we’ll explore how clinical trials influence treatments, decisions, from the perspective of those affected by MS.
This discussion aims to provide a comprehensive look at the progress being made, and the challenges ahead, in MS prevention and care, from cutting edge science, to real world experiences. I’ll just introduce our panellists, although some have been up previously today.
So firstly, Dr. Sarah Flaim, diagnosed MS at the end of 2014, and did an amazing presentation today. I really love the slide of your 12-month diagnosis, and also, the snakes and ladders.
Sarah has since become an advocate, sharing her journey experience on MS Australia’s uninterrupted blogging platform. Among other topics, she’s written about the lengthy and challenging path to her diagnosis, symptom management, and explaining MS to friends and family. Sarah is also a member of MS Australia’s recently created Lived Experienced and Expert Panel, the LEEP, helping to provide valuable insights, to ensure the advocacy of MS Australia has a strong lived experience focus.
Nicolette Murphy. Nicolette moved from London to Australia in 2005, and was diagnosed MS in 2010. She has two sons, aged 17 and 19. She’s semi-independent, and enjoys being part of MSWA’s support network. She has weekly in-home support, and participates in physio and therapies. She enjoys watching tennis with a big summer coming up, movies, and listening to music. She also enjoys posting outfits on Instagram, and also have a YouTube channel, showing her MS journey. She’s pretty amazing.
Professor Ruth Anne Marrie. Ruth Anne Marrie is professor of medicine at Dalhousie University. She received her undergraduate degree in chemistry and her medical degree from Dalhousie University, both with distinction. She completed neurology training at McGill University, followed by a fellowship in multiple sclerosis at the Cleveland Clinic, supported by a Silver Laureate Physician Fellowship Award, from the National Multiple Sclerosis Society. Subsequently, she’s obtained a PhD in epidemiology from Case Western Reserve University.
Presently, she holds the multiple sclerosis clinical research chair at Dalhousie. She serves as a vice chair of the Scientific Steering Committee for the International Progressive MS Alliance. She’s the former chair of the Medical Advisory committee for MS Canada, past chair of the International Advisory Committee on Clinical Trials in MS, and a fellow of the Canadian Academy of Health Sciences.
In 2023, she was awarded the Barancik Prize for innovation in multiple sclerosis research. Her research, as we heard this morning, aims to understand the influence of comorbid diseases on a range of multiple sclerosis-related health outcomes. Other areas of research include etiologic factors to MS, patient reported outcomes, women’s health and prodomal MS, are just a few things she’s got on her plate at the moment.
And finally, a friend of MSA, Professor Bruce Taylor. He’s a medical graduate from the University of Tasmania, and completed his neurology training in Western Australia at the Mayo Clinic, Rochester, Minnesota. He returned to Australia in 1996, and commenced neurology practice in Hobart, Tasmania. In 2004, Bruce Taylor accepted his first academic appointment at the University of Otago, Christchurch, Salt School of Medicine, followed by a position as a principal research fellow at the Menzies Institute for Medical Research, funded by the University of Tasmania Quantum Leap Fellowship.
Over the last 15 years, he’s developed a significant interest in environmental and genetic factors that contribute to the onset and progression of MS. This has included a particular interest in the role of personal UVR exposure and Vitamin D. His work has resulted in over 180 publications including high ranking international journals, including Nature, and Nature Genetics, Lancet, and JAMA.
He’s received over $10 million in competitive research funding and research fellowships, including nine NHMRC grants and ARC linkage, a NZHRC grant, and a grant from the US National MS Society. In addition, he’s received 20 additional grants from local funding bodies.
I’d like you to welcome our panellists today. On a side note, I was just saying there was a slide earlier today which had about 200 words on it. I thought I knew about 10 of those words at best, so that was quite a challenge.
So I will start my question to Ruth Ann and Bruce. What recent advancements in research and clinical trials have shown the most promise for early MS detection and prevention? You have the microphone, Bruce.
Bruce Taylor:
Well, it doesn’t work? Oh, it does. Dang. Look, I think that the real advances have been in, well, the big advance is going to be when the new guidelines for MS diagnosis come out in 2025, and we will be able to diagnose people earlier, using those guidelines. And I think that will be a significant advance.
The 2017 version changed the way we saw MS diagnosis. The 2025 version of the criteria will allow us to diagnose earlier, and also, perhaps more accurately, with using newer techniques. I think, I just emphasise, the problem that we have in MS is that we don’t have a biomarker, we don’t have anything which definitely tells, “You’ve got the diagnosis of MS.”
So, to be able to diagnose it earlier, we need to be able to refine our criteria, or find a biomarker. Until we do those two things, we’re always going to have this problem of this uncertainty, which does impair our ability to be able to diagnose. So I think the criteria will help, but I think it would also, you will point people to being able to start thinking about, well, not even start thinking about, but to increase the rate at which we try to define a biomarker.
Ruth Ann Marrie:
Okay, so no problem following that. Also, forgive me, it’s midnight my time. So I think that’s an important point, in terms of accelerating our time to diagnosis, as we use new tools. And in particular, I think we’re entering an era to allow more flexibility with those tools, that if you have access to more of them, we’re going to allow people to do more of those.
So I think that’s important. I think the recognition of potential prodromal phase in MS is also important to us beginning to think about actually identifying people even earlier than we currently are with the current diagnostic criteria. The sort of successful first clinical trial that we saw in people with radiologically isolated syndrome where we actually delayed that typical clinical event, I think, for me, was a sign that if we could actually identify people in the prodromal phase, that we really might have an opportunity to achieve the kind of delays or halts that we’re really looking for much earlier than we previously had, so that maybe we can achieve the kind of success they’re starting to see in things like Type One diabetes with delay.
So for me, I think that those are early pieces. I think the other major kind of advances are less about the trials per se, but just the global collaboration that we’re seeing really growing, is the thing that I think will really catapult us forward faster, as we’re seeing a more and more coordinated response to challenges in the MS field.
George Pampacos:
Thank you. To Nicolette, and then, I’ll get Sarah to follow up. From your perspective, what are the most significant gaps in MS care that research should address?
Nicolette Murphy:
Well, we’ve discussed this, and we believe that communication is key, to let us know what research is going on, and to filter it down through the teams, to the people in the trenches, really. And if we want to participate, just to be flexible with participation, with regards to time of day and symptoms, flare-ups, anything like that.
Sarah Flaim:
Thanks, Nicolette. You said, I guess I would reiterate that point around flexibility. One of my co-panellists on the LEEP, Lived Experience and Expert Panel, when I was discussing with her before I came, she mentioned having MS is like a full-time job.
You may or may not already have a part-time or a full-time job, but when you add that MS, and then, when there’s the opportunity to participate in certain trials, ironically, it says one on fatigue, it’s actually very, very hard to participate one on fatigue, if you are too tired to. So having, I think, a good understanding around what the challenges of participation might be on the clinical trials front.
I actually have a couple of other points, as well. I did want to say, there was such a great lineup today, so many of the ideas I had, and then, I heard what was going on, I was like, “Well, maybe there’s not as many gaps as I’d thought.” But one thing that I had come up with, that I really wanted to mention, is that element of patient education and empowerment.
MS Australia does a really, really brilliant job with its communication, with its resources. Ingrid, I know you mentioned doing a resource on, in your talk. Those are the sort of things that I think patients find very helpful, because as we’ve already discussed, there’s a lot of bogus stuff out there, say, on diet. Having trustworthy resources is very helpful.
Now, I think what I found missing, when I was going throughout my journey over the last 10 years too, is, I don’t often get that from my doctors. In other words, I go to my doctor, and I get my prescription, and he looks at my image, and gives me a script to a form to go back and get another image.
And we talk medical stuff, but there’s none of that peripheral information that I would find so helpful. I’ve had to go somewhere else for that. So that sort of connection, I think, can be missing.
George Pampacos:
Would you like that to be provided by the state member, or MSA and MSRA, as a centre point on our website, or something like that?
Sarah Flaim:
I guess so much of the material on MSA is really strong. You don’t have to go far to Google some of it and I’ve found some of the brochures super helpful.
I think people will be missing out. Probably now that I know it’s there, and maybe stumbled upon it. But for those people who aren’t as actively looking for it, they might stumble on the wrong information, or not actually find it at all.
George Pampacos:
Yeah, I’ll take that on board, and I might chat to our CEO and state member orgs about that. It’s a real good point. Thanks, ladies.
Bruce Taylor:
Could I do some self-advertising here? We do run the Understanding MS MOOC, which is the world’s largest MS MOOC. It’s a massive open online course. It’s free, it’s run twice a year. It’s a six-week course. It goes for everything, a lot of lived experience, a lot of the journey to diagnosis, and from people with MS on it, and it’s freely available.
The next iteration is in March. We’re also doing a number of additional, what we call mini-MOOCs, which are topics that people have requested like, Choosing a DMT, Mental health and MS, Ageing Well With MS, and the final one is the carers and MS. We are going to develop a fifth one, which is related to women’s health, menopause and pregnancy.
So those will be available freely. They’re sponsored by MS Australia, and also, MS Plus. But getting that information out, a lot of the MS societies will have a brochure in there, the pack they give to people with newly diagnosed MS, but that’s often the worst time to give anything to anyone. But if you’re interested, have a look at the MS MOOC. It’s a lot of information, and very highly rated.
George Pampacos:
Thanks, Bruce. And Bruce, while I’ve got the microphone, I’ll get your answer to this question first. How can emerging research balance improving quality of life with finding a cure for MS?
Bruce Taylor:
Well, I think the two are completely related. I mean, any research that we do, particularly if we’re doing it, that we’ve got to the point where we want to look at it in people, a clinical trial, we’ve got to have a fairly good idea, the first it’s not harmful. And secondly, one of the outputs we always will look at is quality of life.
Our other measures of MS outcomes are insensitive. And that’s another big issue in research, is sensitivity of outcome measures. But in reality, one of the most important things we always look at, when we are designing a clinical trial, is quality of life. And I think you can’t disentangle the two, yeah.
Ruth Ann Marrie:
Yeah, so I think, just from a slightly different perspective, I think to some degree, it’s about the, what can we offer now, for the symptoms people are living with, versus spending our resource trying to figure out these bigger questions? So how do we end all cases for MS?
I agree with Bruce, we need to have all the appropriate outcomes in anything we do, but I think it’s also just about distributing our resources, so that we are concentrating on some of the things that are really that here and now aspect of things, and then, orienting some of the work toward those longer term future things.
So it’s a distribution, it’s making sure that any given organisation doesn’t focus on only one thing, but it’s also trying to coordinate those world activities, so that all of those things are covered, so that every area gets to move forward, so that day to day life is better now, with that promise of the future, where that won’t be an issue anymore, because hopefully, we’ve actually prevented the cases altogether.
George Pampacos:
Thank you. Nicolette, we’d like to add anything to that? No? All good.
Bruce Taylor:
Could I just say, one thing about research is, people, regardless of whether the research has a positive outcome, people do better if they’re involved in a research study. So it’s one of the things that people don’t often realise, is that there’s an overall benefit from being involved in research.
George Pampacos:
Sarah, like to add anything?
Sarah Flaim:
Yeah, look, I completely agree with what the other speakers have said. Perhaps just pulling one thing out from, you mentioned coordinated approach, multidisciplinary. I think we’ve seen that here today, where there’s been the structure of the day with the primary, secondary and tertiary prevention, starting upfront with talking about a cure.
I think, if there’s the superpower, the brain trust in this room, and in the community, who all have their individual strengths, if the multidisciplinary nature of their research can be coordinated and brought together in a holistic way, you can kind of have both at once.
Nicolette Murphy:
It’s really nice to have really big brains on our sides helping us, because if it had been in anybody else, or any other disease, we might not have all this. And I feel very privileged to be a part of it. I feel like, you’re my team, you’re my gang. So yeah.
George Pampacos:
We often say, it’s amazing, it’s an MS family-
Nicolette Murphy:
Yes, yes. I believe that.
George Pampacos:
And, unlike believe that disability or illness, it really feels like an MS family globally, and also, within Australia and WA.
Nicolette Murphy:
So nice, that-
George Pampacos:
It is beautiful.
Nicolette Murphy:
We’ve got global points of view here today, as well. I like that.
George Pampacos:
It’s really good. To Ruth Ann and Bruce, back to you two. Sorry, I know. Hang on another five minutes.
What are the most critical challenges in translating research breakthroughs into clinical practice?
Bruce Taylor:
The ability to develop, and also, the clinical trials mechanism, which is used in the pharmaceutical industry, and don’t get me wrong, the pharmaceutical industry does a wonderful job, is a very artificial environment. It’s a two-year timeframe.
Whereas, if we could be able to utilise newer trial designs, which we’re going to do with the Platypus trial, which will hopefully get going in early 2025, is novel trial designs, and implementation of them will help greatly in shortening that time. And I also think that the foresight of MS Australia, in being able to come in and support trial, and initiations of trials, which would not be done by the pharmaceutical industry, like the STOP MS, by [inaudible 00:20:11] Platypus, which are looking at repurposing the drugs is a much quicker way of being able to get therapies through.
Now, I’m using drugs as an example, but there are other things that are really important, or interventions to control pain with psychology, interventions to help with physical activity, modifiable lifestyle factors of patients. There’s all these sort of things, that if we could actually, and we are, and MS Australia is, is bringing those things more rapidly to fruition. And that, I think, if we could actually shorten those time frames, that would be a really major breakthrough.
Ruth Ann Marrie:
Yeah. So, I mean, I think the clinical trial world is one piece and for a specific pathway, if you’re thinking about pharmaceuticals, but there are a lot of other barriers to moving information into clinical practice, in a way that we want, and clinically and effectively. Some of that is just making sure people know that what they used to do is not actually effective, and that there’s newer information that should change things.
So clinicians are slow to change behaviours, often related to things. You train in a particular way, you become very attached to how you’ve done things. Change is hard, and so, anybody, any of the psychologists in the room, know that plan theory of behaviour change, and all of those things, we don’t really use that very often, trying to make clinicians change their patterns of behavior.
And then there are practical things about implementation within a healthcare system. I might be able to say that access to a particular course or tool would be useful. It doesn’t necessarily mean my health system can pay for it, or that they have the personnel to deliver it, who we need to find, and train, and pay for. So there are all of those pieces.
And I think, often, when we do our studies, when we’re thinking about interventions and other things, we don’t actually do a very good job of creating the information. That’s what a policymaker needs for us to justify that decision.
So we might, for instance, if you’re trying to say to a policymaker, “What does it mean to delay somebody’s disability progression, if they have progressive MS by 30%?” They’ll say, “Well, what does that mean? Are they in the workforce for six more months? Are they less likely to turn up in my hospital? Are they less likely to break a hip, and therefore need a surgery, and a prolonged hospital stay?”
We don’t really make a very good case about the health economics and health system impacts of the work that we do. And in the absence of that, it often is a barrier to us, selling the importance of all of these other changes that are necessary. So we actually need to do a better job of that, in order to move these things forward.
I think for investigator-initiated trials, there’s often a better impetus to thinking more broadly about that. And I think, as there’s more engagement of people with MS, hopefully, beginning to reflect that kind of ecologic perspective of what this means will improve. But I view those as very important barriers, to actually moving that translation for research into practice more quickly.
George Pampacos:
Thank you. And there’s two points here. We are so excited by the Platypus and Octopus, in the UK, program, and I think we’re undergoing an economic study at the moment, aren’t we, Rohan, in relation, the financial impact MS has on the Australian economy?
So we look forward to that being released, I think, some time this year? Late next year. There you go.
Final question. To Sarah and Nicolette. How do you view the role of clinical trials in shaping your treatment decisions?
Sarah Flaim:
Sure. So I’ve got a couple of ideas, again. One is, and I posed a question earlier on personalised treatments. As a person with MS, I do remember, a couple of times now, having been given a list of drugs, and being told to pick one.
I’m a nerdy scientist, so I went away, I got a whole lot of publications from the web of science, and I went through them. I forced my long-suffering, nerdy husband to do the same. And at the end of it, we still didn’t know what to pick.
So I felt like I had a condition where, yes, there were great drugs, but I had no idea which one was going to work for me. And the only way to test that is to pick one, take it, until it doesn’t stop working. So if there is, I mean, maybe this is just a really lofty goal, I don’t know how doable it is, but getting to the point where a neurologist can sit down with their patient, and say, “Well, based on the data points we have, yes, these are the drugs you could take, but actually for you, Sarah, this is the one we think is going to work best at confidence.”
Because, otherwise, it does feel like I’m just taking a pill, or an injectable, whatever it is. The other thing I was going to mention, though, when it comes to clinical trials, and I think it piggybacks a little bit off your comment, Bruce, around patients who engage are better off. And I think there’s a mental health aspect.
So it brings a degree of hope and optimism to be part of the process of gathering new data, new science that will improve outcomes for a much broader community. As I said, mentioned, you get the hope, you get the optimism, and you get that sense of creating or contributing for the greater good. If I didn’t already overdo the metaphor, I probably will do now. If my snake can help somebody else to get a stronger ladder, then that makes me feel good.
George Pampacos:
Good answer. Nicolette?
Nicolette Murphy:
I definitely feel a part of any up and coming research. I feel like we’re very respected, and we’re being given the opportunity to choose our DMTs. However, we’re being guided, as well. So where we lack the science of it, we’re being given the knowledge. So it is nice to be included, and I’m very much looking forward to Platypus, in Western Australia.
And it’s nice to be, not just MS Australia, or MSWA, it’s just nice to, again, I emphasise the family, but I feel that I’m involved with, and being part of Canada, I’m loving the Canada input, the UK input, because that’s what I’m all about. So it’s exciting times, and I feel I’m with the right lot, and they’ve got my back. yeah.
George Pampacos:
And I think we’ve beem really lucky the last three or four years, with the relationship that Des Graham and Julia, our head of research, has built with the UK Canada, and the US, we’re all so excited for the prevention platform.
It’s being steered by Ruth Ann, as well, so it should be very exciting. Any other special comments, before we close? Bruce, I hear you smiling before.
Bruce Taylor:
Could I just say, that as a neurologist, it’s sometimes hard to know, not big on you, but when people come in, and often I’ll say to people, “This is a lot of information.”
You’ve got two choices here. One is, you go away, and think about it, and these are the drugs. And I’ll say to people, if you want me to tell you what I think is the right drug for you, I will. It’s individualised.
Some people want to know everything, and want to think about it and make everything, but other people say, “You just tell me what I need to take.” It’s all about communication, and some neurologists don’t feel like that. They want people to be completely involved in every aspect of their decision, which is fine with some people, but some people, it’s just too overwhelming, and they’re much happier for you to make that decision.
And you’ve got to work it out with yourself, and your neurologist, as to how you want to go about this. And neither approach is wrong, but it’s an individualised, it’s individualising medicine. So I would just emphasise that.
Ruth Ann Marrie:
Yeah, so I agree that people vary. I mean, so for awhile, we were trying to actually, our nurses were using the Control Preference Scale, to kind of figure out where people were on that scale. And then, they were sort of tailoring during education sessions, how much information they delivered, and of what, based on that, to try and get things more balanced, to what individual people want.
But I think we also need to recognise the changes over the course of people’s disease. So, depending on what their knowledge is, depending how much else is going on in their lives, depending on the experiences they’ve had with other medications.
So it’s not just, “This is what you think now is what you think forever,” that really changes. And you have to really talk to people each time, and ask them where they are, like in the past you felt this, but is this where you are today, or not?
Bruce Taylor:
And also, that just because you’ve chosen one medication, doesn’t mean you’re on that medication for the rest of your life. You can change.
George Pampacos:
Well, to the four of you, thank you very much. So, Nicolette?
Nicolette Murphy:
Thanks to MS Australia for inviting us, and thanks to Tennille, for all her hard work to get us here. And thank you for all the people that talked today, and we learn a lot. And thank you.
George Pampacos:
Now, to the four of you, thank you so much for coming. I know it’s been a long day.
I know you’ve all travelled from all around the world, and you need to go and have some sleep. But thank you very much too, for contributing to today, and also, this panel session.
Voiceover:
Thanks for listening to The Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today, at msaustralia.org.au/podcast.
